We are asking for your help! - We need at least 500 Patient to respond.
We are conducting a survey of PMR and GCA patients for a research project in relation to deafness and other hearing problems. We had concluded that some basic research information from patients was needed. This idea was then discussed with other Consultants in the field of research into GCA&PMR, the National Institute for Health Research (NIHR) and NHS England expressed an interest. After some discussion with the NIHR, we agreed to donate a start-up amount of £1000 to enable this project to go forward.
We need your help to ensure that this basic survey has many respondents – the way forward and future involvement of NIHR now depends on your participation. WE NEED AT LEAST 500 RESPONDENTS!!
So please HELP us by participating. Send an email or snail mail and the survey will be sent to you to complete and return. The cost to us via email both ways is zero. Snail mail means postage costs, so if you do not have internet access perhaps a son, daughter or grandchildren do. Contact details are below.
This survey is not confined to the UK - you can fill it in wherever you live on Planet Earth. Every response counts – and will make a real difference to the way we can understand and treat PMR / GCA in future!
Have e mailed and would be really interested in this. Although I was deaf (one ear Cochlear) my hearing deteriorated badly and I lost all usable hearing in my right ear when I had PMR
Please send me the survey. My first attack of GCA was in 2011during which I lost most of the hearing in my right ear (the side most affected by pain), and some in my left. I have had hearing loss due to nerve damage confirmed by ENT Consultant and now wear two hearing aids.
I'm willing to participate, but not sure if I'm the type of respondent you need. I have had PMR since 2010 then GCA 2013, but no hearing problems. Please advice. Thanks.
Please can you use the email address as above, which I repeat:
EMAIL ADDRESS: pmrgcafightersne@googlemail.com.
You should not really post your personal email address on any forum. Can lead to problems with unwanted emails coming to you - do not make it easy for the spammers.
Alternatively if really stuck, use the messaging facility on the site - top right hand corner - it is private.
I will send out to those of you who have posted your email address on here - so no need for you to send email to the googlemail address.
Thank you to all who have taken part in this survey to date.
As the postman delivered this morning, he has been intrigued with the address on the letters, so he knocked on the door to find out 'who was PMR & GCA' as he knows both Joan (my Cousin) and myself. We laughed, explained and he has taken some of our business cards away.
We have sent out by email and snail mail, nearly 200. Support Groups and our sister charity in Scotland, have sent it to all their contacts.
Today we reached 172 completed surveys including Australia, Canada, USA and European Countries and of course the majority from the UK.
On 11th November, we will know if we have hit the target of 500
If you have not yet got around to participating, we really do need
5 minutes of your time to send us a request
About 15 minutes to fill it in
Then 2 minutes to return by email
or ? minutes, part of your daily 45 minutes walking, to a post box.
As I have only recently joined this forum having been diagnosed with GCA in November, I am very interested in the results of your survey. I started this journey with inner ear problems and still have them even after 7 weeks on 40/30/20 mg prednisolone. Other symptoms have disappeared. Waiting for an ENT referral to check what is going on...
My first intro to autoimmune disease was autoimmune inner ear disease (AIED) 6/7 years ago. It was quite a rough ride, high dose Pred, MTX,...hope yours resolves quickly, best of luck.
THANK YOU to all who responded and took the time to fill in the survey.
The results have been processed and an application has been submitted to the BSR in the category:
Prizes and Awards
Young Investigator Award
BHPR Student/ Recently Qualified Health Professional Bursary.
PMR&GCAuk North East Support Charity Reg No 1138409 have already provided £1,000 this was needed to enable the application.
Without our members and kind people, some of whom do not have PMR and GCA who raise funds and donate none of this would have been possible. Thank you.
We received many more replies to the survey than we thought and I realised that collating, analysing and preparing an abstract was beyond my capabilities and time was of the essence.
Two youngsters stepped up to the plate, Ben (who works in the Trade Union field) and Annalize, a young lady, who currently works in a Care Home (minimum wage) waiting to see if she is successful in getting a place at University to study medicine. Ben designed and prepared the spread sheet and then Annalize did the rest. Both of them refused any payment.
The full story is in our Winter Newsletter ‘You are Not Alone’ which is available on line now. pmr-gca-northeast.org.uk. Future updates will also be published in future newsletter.
The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust will now undertake qualitative research following the result of the basic survey which we did last year on ‘Your Ears’. We donated £1000 start-up costs. All future costs will now be paid by the NHS England and NIHR .
They need at the very least 300 people with GCA, 300 with GCA&PMR and 300 with PMR. It would be extremely useful if more patients participate. Increase in numbers make it more viable.
YOU now need to contact the Queen Elizabeth Hospital Research and Development in one of the following ways with your name and address.
Subject heading: Research: GCA&PMR.
E:mail: Susan.pugmire@ghnt.nhs.uk
Postal Address: Sister Sue Pugmire
Co-Investigator/Research Nurse
Queen Elizabeth Hospital
Rheumatology Unit/Jubilee Hospital
Gateshead NE9 6SX
Once your initial enquiry has been received research documentation will be sent to you via the internet or post. The postal reply will include a prepaid envelope for you to return the completed documentation.
The first part of a long journey showed that further research was essential and whilst we will be kept in the loop the hard work will now be done by our NHS. This sort of research is not undertaken by Pharmaceutical Companies. Without the NHS this research would not be undertaken.
The NHS works in a quiet sort of way and the important contribution it makes to research and development is often overlooked or not just known. Please do not put this aside thinking ‘I will do it later’, we need you to do it now – so block and copy and help with this research.
A more detailed explanation can be found in the Summer Issue of ‘You are Not Alone’ which is on the website click ‘All Newsletters’ on Home Page. Now it has been handed over this is the final part that PMR&GCAuk North East Support have to play. We will be given progress reports. If you have questions you can send us an email.
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